Exam Results

We took David in for another eye exam on Monday. The news was so-so. There is a section of the tumor that is very stubborn, and won't die no matter what we do to it. The doctor did a whole lot of freezing on it this time - which made Dave's eye very swollen and red. This doesn't seem to bother him, though. He is only bothered when we try to put the ointment in it to keep it from getting infected.

The doctor told us that he just isn't sure that this is going to work since this section of the tumor has survived everything else we have done to it. His words were, "There are only so many more times that I can do this before we need to make a decision."

It may surprise you, but this news wasn't earth shattering to me. It was pretty much more of the same, and I have been prepared for the possibility of having to remove Dave's eye anyway. This is not a sure thing yet, but we will see. I think time is winding down before it is inevitable.

The good news was that his MRI from last week was clear. This means that the tumor is staying contained in the eye for now and not moving anywhere else. So, if it comes down to removing his eye, that should take care of it.

So, I guess it's not such bad news after all.

Thanks for praying and keeping up with us!

Have the Merriest of Christmases!!

-Kim

Results

David has recovered from his MRI for the most part.  He is still clingy during the day...he wants me to hold him all the time so that it is hard for me to get any work done.

The results of his MRI were very good.  The cancer is staying where it should and not moving into his brain.  This is very good news.  

We take him on Monday the 22nd for his next exam with the eye doctor.  I will let you know what the news from that visit is as soon as I can.

In other news, I spoke at length with the lady from Child Development Services.  David's pediatrician had referred us there since David is not talking yet.  Well, since our visit to the pediatrician, David has picked up a few words that Rob and I can interpret.  The CDS lady seemed to think that he was fine from the interview on the phone.  So, we will re-evaluate again when David turns 2 years and see what we think at that point.  Apparently, it is difficult for them to evaluate his speech before then anyway.  

So.....all that is left is "Merry Christmas"!!  We hope that you have a wonderful Christmas Holiday with family and friends.  We are so grateful for all that everyone has done for us. 

-Kim

Rage

We have mostly survived David's MRI this time.  These appointments are the worst.  However, I guess we got the good end of the deal this time.

The nurse in the oncology dept. inserted David's IV.  She got it on the first try, but David had already had to sit on the scale, have his blood pressure taken, and his heart and lungs listened to.  He really throws a fit each time any medical looking person even looks at him much less touches him with some medical implement (like a stethoscope).  So, trauma had already reigned supreme by this point.  This nurse was also able to quickly draw blood for his lab work - blessing.  

They were fairly quick in the Radiology dept. today - another blessing.  Last time it took forever.  David is hard to get to sleep, so that took awhile as the continued to give him more and more medicine.  Finally, he dropped off.  They didn't get 100% done with the MRI before he woke up, but the radiologist said he had enough to look at.  

David woke up with "post-sedation RAGE!!!!".  Between Rob and I, we were bearly able to keep him from hurting himself as he was flipping around and throwing himself down and screaming.  Apparently this is a common side effect of the sedation medication.  I don't think we will be able to handle this again if he gets any bigger.  I don't know what the alternative is.  

I thought we were clear of the nausea this time until we were almost home, and he let loose.  Rob is still cleaning up the van in the freezing cold as I type.  David has mercifully gone to sleep in his very own crib.  My arms and brain are exhausted.  We won't know anything about the results until at least Monday.

Thankfully, we only have to do this every 6 months.

-Kim

ps.  His next exam will be Monday, December 22.

MRI

Hi Folks!  I hope everyone is keeping warm this extra cool season.  For the first time in years, I actually had to go out and buy a real coat.  I have to admit that I am not enjoying the cold weather.  The kids look forward to snow, but I am looking forward to spring!

David had a good exam today with his regular pediatrician.  She is great, and said that mostly things are going as should be expected.  She was a little concerned that David is really not talking yet, and so we will be taking him to "Child Developmental Services" (I think that is the name) for screening at some point in the future.  She said that his not talking is likely a control thing.  David needs something in his life that he can control, and he has not needed to speak - so he hasn't.  But better safe than sorry.

We go over to Duke on Friday.  David will see the oncologists and then have an MRI.  Last time we had an MRI, it was a nightmare.  I hope this time will go better, but I am skeptical.  I think I have learned enough about the procedures to be a better advocate for David and not allow them to continue to do things that torture him - I was not very impressed with the staff I worked with last time.  David also got very very sick on the way home from the last procedure, but I think I also have some ideas of how to make him more comfortable.  

Still no word on when his next exam will be, but I am hoping to talk to the Eye Center people today to get that scheduled.  

No real bites on our house yet, but we are still hopeful.  We are in the wait and see mode, but not too impatient.  

I will update you soon!  Merry Christmas to you all!!

-KIM

Special Prayer Request!

Hi everyone!

Don't worry, David is fine.  He has another meeting with the oncologist on Dec. 12, and likely he will have an MRI before that date.  We have not scheduled his next exam with the Eye Doc, but we are hoping to schedule it also on Dec 12.

My prayer request is this:  Our house (which is for sale), is having a second showing tomorrow 11-20-08.  Please pray that it will show well, and that a contract will proceed from it.  It has been very difficult for me to keep the house up to show quality while we have been continuing to live here with three kids.  But even more than that...we would really be able to find a great house in a great place in Winston Salem if we were able to move right now when housing prices are so low.  It would be a great thing.  So please pray!!

Thanks!!

Kim

Nothin' New

Hi All!  I wanted to update you on David's last exam.  The doctor didn't find any new growth this time - which was such an awesome thing!  He decided to go ahead and cryo all of the old spots just to be sure that they are dead (since he can't always tell just by looking at them).  

David was a champ the whole day.  Our appointment was 9am, but they didn't take him back to the OR until 12:20pm, so it was a very very long day for us all.  But David was very well behaved.  He even slept for a little while (and so did Mommy and Daddy).  His eye is a little swollen still, but not too bad, and I think it looks much better today than it did yesterday.

We don't have to go back for 6 weeks, so that is nice.  David is beginning to understand what that place is all about, so that make it nice when we don't have to go as often.  

Thanks again for all your prayers.

Kim

Update

David's next exam will be on October 31.  This is a little longer than what the doc told us to begin with, but he seems to think this will work fine.  So, that is what we will do.

Our house went on the market this past Wednesday.  So far, we haven't had any showings.  We don't know if that is bad or not since this is the first time we have ever sold a house.  We are hoping that this won't drag out forever.  There are several good possibilities in Winston-Salem, so that is encouraging, although we won't really start the serious search there until we are closer to selling this one.  We would covet your prayers for this whole process.  

The big kids are doing really well in school.  Isaac is doing much better than we could have imagined, so that is a great blessing.  Hannah is made for school and enjoying it a lot, although she has had her first bought of friendship issues.  She is doing very well, however, and we are chalking all of that up to learning about life.  

I think that is about it.  I spend my days making sure the house is ready at a moment's notice for a potential buyer to walk through.  It keeps me very busy, but so far, I have been able to keep up.

-Kim

Growing

So, our news from David's exam yesterday was not the best.  The doctor found a small section of new growth.  He believes that it is "contiguous with the original tumor", but he can't be sure.  The good news is that it was a fairly small growth - about 1mm round - and the doctor was able to hit it with cryotherapy.  Unfortunately, we will have to speed up our time between visits again.  This time we have to go back in 4 weeks to see how this latest treatment has worked.  

We also had a visit with the oncologists.  This was pretty uneventful.  We have to go back on December 12 for another oncology visit and also an MRI - that will be a long day.  

The best news is that the left eye is still clear of tumors.  

I guess we are just still in a holding pattern to see what happens next.  Thanks again for all your prayers and support!

-Kim

Move

Life has been happening at an alarming rate the past few weeks.  

It has been confirmed that David will only see the oncologists every 6 months unless otherwise needed.  We have scheduled his next exam with the eye doctor for September 12.  This is the longest interval we have had between exams since he stopped chemo.  This is exciting, but also a little anxious for me.  But, it seems like these intervals will be getting longer so that is great news.  We have to have exams every 3 months until he is 3 years old, and then every 6 months until he is 5 or 6.  After that, I don't know... that is a long time in the future.  He is doing very well.  He is walking and getting into trouble.  

The big kids both start school on Tuesday.  Tomorrow is Isaac's birthday, so that will be a nice day.  They will both be at Reedy Fork Elementary this year.  You can pray for Isaac that this will be a smooth transition.

And finally, we have decided to put our house up for sale and move closer to Rob's work.  We have been talking with a realtor who is going to help us to sell.  We are in the process of doing some of the cosmetic work to make it look just right.  We have an aweful lot to do.  We have a bit of painting on the inside, and cleaning of the vinyl on the outside.  We also have a ton of packing and moving to get us down to the bare minimum of necessary things.  It is a lot of work, but Rob and I will be childless on Labor Day weekend, and hope to get a lot of this done.  Please keep us in prayer as we make all these decisions about this move.  Pray that the house will sell and that we will be able to find a house in the proper place that will fit our family and keep Rob from having to drive so long each day.  

I hope you are all well, and I will update again soon!

-Kim

Intervals

I talked to David's oncologist yesterday, and he feels like we don't need to go in and see the oncology people but every 6 months.  This will be great!  Each time we go, they will do blood tests and David will have to have an MRI.  These are mainly precautions just to be sure that the cancer isn't spreading anywhere else in the body.

I am hoping to talk to the Eye Center people today and schedule David's next exam with them.  We are hoping that after this one, we will only have to go in every two months for exams, but it will depend on what the Doc. finds during the exam.

So, that is where we are.  David is growing nicely - he is our most robust child.  Hannah and Isaac love him, and he loves them, so that is fun to watch.  

I am ready for school to start.  It has been difficult for me to stay above the mess that three kids make when they are home every day, and I have also found it very hard to keep the kiddos occupied.  So, I am ready for a little more routine.

-Kim

Update

David had his exam as scheduled on Monday.  Even though the OR was very very busy that day, they took him back very quickly.  He was great in the pre-op room....just playing and laughing and getting sleepy on shoulders.  

The doctor seemed pleased, although he still had to do a little more cryotherapy.  He told us that he hasn't seen any new spots in the last few exams, but some of the old spots aren't "flattening out" like he would hope to see.  He said that he can't be sure if these spots are dead or alive, but he feels like he has to treat them just in case. He didn't give us any ultimatums about enucleation this time, so we are feeling a little encouraged.  

We get to go back again in 6 weeks.  Unfortunately, that will be right around the time that Hannah starts back into school, but, what can you do?

In other news, we may be changing our oncologist.  Our current oncologist has been great, but he is changing his clinic days to a day that doesn't coincide with David's EUAs.  This would mean that we would have to make separate trips to see him and the eye doc.  We aren't sure yet what we will do, but it has been very convenient with gas prices as they are to only make one trip.

The big kids are currently in Waxhaw playing with their grandmothers (my mom and her mom).  They are having a blast, and in the meantime, Rob and I are doing some summer cleaning and getting ready for a yard sale that we are going to have next Saturday.

-Kim

Results and Appointments

So, David had a surprise MRI a little bit ago.  Although it was a traumatic experience for us (getting IVs put in and other little things), the results were good.  They did not see any tumors other than the ones that they already knew about, so we are happy about that.

We were able to go to Wilson, NC this past week to visit with some of Rob's coworkers who were especially gracious to us while David was still on chemo.  They sent us meals each time we had to take him to the hospital....among other things.  It was so nice to be able to put names and faces together!

David has really come to like walking.  He still totters a lot, but he is getting better and better by the day.  The big kids are very excited about this new trick.

I will post more again soon!

-Kim

Now

Hello Friends,

I know it has been some time since I have updated here.  

About 10 days ago, David woke up from a nap with puss coming out of his ear.  The doctor said that he had a very bad infection in both of his ears.  We just finished up the antibiotics yesterday!  He really takes medicine very well, so that is a blessing.  The medicine gave him a very bad diaper rash, but I think it will clear up quickly now that he isn't taking it any more.

We just had a lovely family vacation over the Father's Day weekend.  We went to the beach with my parents, Grandma Goodall, Aunt Jeanne (my Mom's sister), my brother, and my nephew - Elijah.  It was a really nice and relaxing time.  David ran a fever the last full day we were there.  I am still not sure what that was about, but he seems to have gotten over it nicely.

Here is David on the beach.

He seemed to have a great time.  He crawled around like a crab, watched the big kids in the water, marveled at the waves, and ate sand.  It was fun for him.  He didn't spend too much time outside since he is prone to sunburn, but he especially loved staying inside with Grandma Goodall who spoils him.  

David's next exam is scheduled for July 14.  Until then, Hanah, Isaac, and I will be in my good friend's wedding tomorrow.  Then our little family will be at the beach again for the 4th of July.  We are going to have a yard sale sometime - which will be a lot of work, but hopefully lucritive.  It will be a busy summer.

-Kim

ps.  If you would like to see more great pictures, just click on David's profile picture (of him eating his birthday cupcake).  This will take you to our photo site!

MRI

I forgot to tell everyone that our MRI had to be rescheduled.  I still don't know when we are going to have it, although, we have scheduled David's next EUA for July 14.  

David's eye is healing very fast this time.  It was only swollen for about 24 hours, and now, it just has a few red spots in it.  It isn't tearing up quite as badly this time either.  

David has started to walk.  He still doesn't do it all the time, but over the past few days, he has been doing it more and more.  Life continues to change.

I will update again later.  We are going to be spending the later part of next week at the beach with my Aunt from New Mexico, my Grandmother, and my parents.  It will be a nice vacation that none of us have had in some time!

-Kim

One

Friday, David turned one year old.  He also had another exam.

The whole day went very smoothly.  David did spectacularly as always, and the flow of the operating room was smooth, so we didn't have to wait very long.  

The doctor found a very small spot that he decided to cryo again.  He seemed extremely pleased with the progress from the last time we were in.  We have to go back in 4-5 weeks, so that is a little longer than last time.  The only sad news was that he told us that if he needs to cryo again next time, we need to sit down and talk about the risk/benefit of continuing to cryo an already blind eye.  So, that is kind of hanging over our heads until then.  I don't know exactly when that appointment will be yet.

David is doing very well.  He caught a cold at the hospital, so he is very congested, but his eye looks great.  It didn't swell up like it has in the past, and each day it looks better and better.

I will keep you all up to date on other appointments.

-Kim

Appointments

Hi there! I just wanted to give you a little update on us. David is doing very well right now, and has even slept through the night two nights in a row, so I am hopeful that this will become a habit! He has had some tastes of table food, and now resists eating baby food, so that has been a challenge. He still doesn't really know how to chew, so I have to be creative in finding soft things that he can eat.

His eye is still not back to normal, but I didn't expect it to be yet. It still waters a lot - especially when he is in bright light.

He will have his next exam on Friday, May 30 - his first birthday. Then on June 2, we will have a follow up with the oncologists and also have an MRI to make sure that no cancer has made its way into his brain. This is mainly a precaution and not a proceedure that we are doing because we suspect anything. Still, we will likely be very nervous until we get an all clear result.

The doctor at Duke reccommended that we get both of the big kids' eyes check out. Isaac was first in line. Thankfully, Isaac cooperated extaordinarily well, and the Doc said that his retinas were "beautiful". Hannah get to take a turn in June, but we aren't expecting any problems. Usually retinoblastoma is found before the age of 5, and Hannah is 6, so it's unlikely that we would find anything, but better safe than sorry.

The other members of the family are doing well. Isaac's preschool is about to end. I think he has one more week to go, and then his summer "break" will start. Hannah goes until June 11. Then I think we will be having a visit from my Aunt Jeanne from New Mexico - those are always a treat. We have a family trip to the beach planned for the July 4th holiday, and my 10 year high school reunion is also coming up. And, as always, we will have the regular doctor's appointments for David.

Well, I must go, but we appreciate you all taking the time to stay updated with us!

-Kim

Update

David has been healing well since his last little bit of cryo. His eye lid is a little droopy now, and it tears up a lot. He will often have tears running out of that eye. I think this is supposed to clear up, but it is something that we will be speaking to the doc about next time we see him.

Our next appointment will be on David's birthday, May 30. I think this may also involve a trip to the oncologists for a follow up, but we will see. Hopefully the news will be good that day.

I am feeling a bit run down these days. Maybe all that the last year has held is now beginning to sink in. I am coping alright, but find myself much more ready to go to bed at night than ever before.

David is in the process of weaning. I need to find a way for him to sleep through the night, so that's a dilema. I have gotten very few full nights of sleep since he has entered our world, so I am looking forward to that. I am hoping that a little less dependence on me will encourage him to sleep better.

Well, I must be quick as I need to go pick up Hannah from school! Thanks for reading!

-Kim

Encouraged

David had his exam this past Monday as scheduled. It was a little more encouraging than the past few have been.

The Doc found some remaining spots, but he really felt that these were old spots and not new ones that had formed since the last exam. He did some fairly extensive cryotherapy on these which also included a small incision so that he could get a better angle on the spots with the probe. We don't have to go back for 4 weeks this time, so that will be a nice break for us as well.

David did spectacularly as normal. We had to wait 3 hours for them to come and get him for surgery becuase the opperating schedule had been backed up for some reason. He didn't fuss or cry, but just played happily with Rob and I until they were ready for him.

He has been in a significant amount more pain this time, though. Yesterday was a very rough day for him, and he was very fussy and refusing of naps. His eye has had a lot of discharge this time too. Overall, he has been bothered more by the surgery (not surprising). He rubs his eye alot, and I have to be sure to get the ointment in it so that he doesn't get an infection. This takes all my strength, and even then, I think I miss most of the time. But I am trying. It will be nice for David that his eye will have one extra week to heal before we have to go back in, though.

Last night was a tough night. David didn't sleep much, and even when he did, it was restless. Today, overall, he has done better than yesterday, so we are hoping for a better night tonight.

That is all for now, but we do thank you again and again for all your prayers. They are so dear to us.

-Kim

Next

It has been difficult for me to find enough time to sit and write lately. I appologize.

David's next exam will be this coming Monday, April 21. I dread this one a little more than usual. David didn't do quite as well coming out from anesthesia last time as he normally does. He was much fussier, and very sleepy all day long. I am hoping that it was just a one time deal and that he goes back to his quick wake up next time.

He has healed quite well from the last cryo. His eye is just slightly bloodshot still, but other than that, you wouldn't know that he'd had anything done. He is such a happy boy. His newest trick of the last few days is standing without holding on to anything. He even lurches forward from that position like he is going to walk. So far, it hasn't worked out so well, but it will be soon! He is quickly learning his way around table food, and seems to enjoy that. I am glad for this since it allows others to get in on the feeding action, and gives me a little bit of a break.

Well, the crying I hear tells me that it is nap time, and I must go. Thanks for keeping up with us. We appreciate you all.

-Kim

Puffy

On very short notice, David had another EUA yesterday. The doctor found another spot, smaller than the ones last time, but this one didn't have as much time to grow as the last ones. He did a little more cryotherapy, so David has a puffy eye again.

We are supposed to go back in 3 weeks for another exam, possibly more cryotherapy.

The anesthesia seemed to effect David more this time than it ever has before. He was extremely groggy all afternoon, and it took quite an effort for me to get him to drink anything. Eventually, he took some milk and then started to perk up.

The doctor has pretty much let us know that this cryotherapy is the last ditch effort before removal of the eye. He said that we will "cryo until we can cryo no more", and then we will have to think of the next step.

I would love for David to be able to keep his eye since it would look much better than any prosthetic that they can produce, but more than that, my prayer is that his left eye will continue to stay healthy. I pray that there will never even be the hint of a tumor in that eye.

That is where we are for now. I am tired since we had to get up at 4:30am yesterday morning and it was a long day, but I think I am in good spirits.

Talk to you again soon,
-Kim

Getting Better

David's eye is healing well. It is still quite red in spots, but they are far to the sides of his eye where you can only see them when he is looking far right or far left. The swelling is pretty much gone.

I still haven't heard when the next exam will be. I will probably call them tomorrow if I don't hear from them sooner.

David has, once again, dealt with all of this in his normal way. He hasn't seemed to be bothered by it at all.

Rob and I took a little trip together this past weekend. It was really nice for the two of us to get away together. My mom took care of all the kids. I think we all enjoyed it :-).

I will update you as soon as I can on when David's next exam will be. We will cherish your prayers for us on that day since it could be a wild one.

-Kim

Chemo to Cryo

David's exam yesterday didn't give us the results that we were hoping for. The doctor found several new growths in the right eye (the bad eye). Thankfully, the growths were at the periphery and he was able to use cryotherapy on them. This is the same basic technology that they use when they freeze warts off at the dermatologists'. David seems to be handling it all in his normal happy way, although he looks like he's been in a championship boxing match.



So, now I get to wrestle him to try to get some ointment into his bad eye several times a day. This is no easy task since he's such a strong little booger. I have to admit that I don't think I have really gotten much of the ointment into his eye....just around his eye. Maybe it will soak in.

We have to go back in 3 weeks and see how the cryo worked. Rob and I also have to weigh the benefits and risks of continuing to treat an eye that is already mostly blind.

Rob and I are really doing emotionally quite well with this news. I think that we were both prepared that this was a real probability, and it didin't come as too much of a shock. It was discoraging, but we are dealing with that.

Again, we appreciate your prayers more that words can say. The older kids are handling the scariness of the eye alright. Isaac is fairly unsure of it, but I think he is coming to understand it.

I will update you some more later.

-Kim

Port Free

David is scheduled to get his port removed tomorrow. I know this is kind of short notice, but it was short notice for us too. I have also been very sick, so I haven't been able to update.

All of this is health permitting, though. He still has a pretty decent cough, and a runny nose, so I don't know if they will go ahead with this tomorrow or not. There is no way for us to know until we get there, though.

Once the port is removed, we don't have to worry about him getting fevers as much. One of the main concerns for him currently when he runs a fever is that the port has an infection in it. Once it is removed, and since we are this far past his last round of chemo, it is just the normal concern of any child with a fever.

We are really looking forward to warmer weather and healthier bodies. Thanks again for your prayers!

-Kim

Can't Get Over It

So, we just seem to get sicker and sicker. Now, we are on the 5th round of pink eye, I ran a fever on Tuesday and now have a bad cough and congestion, both Hannah and Isaac were vomiting on Tuesday, and David is very very congested still. We just seem to keep passing around illnesses. Thankfully, Rob has been in good health so far. Hopefully that will continue.

I take David to Duke tomorrow for a pre-op appointment. His first post-chemo exam under anesthesia will be on March 10.

Other than catching every illness under the sun, David is doing quite well. He is even starting to grow a little fuzzy hair - so far, it looks like he will be a blondie. He is strong and active despite all the sickness, so that is a blessing. He is beginning to get brave about letting go of the couch or whatever he is using to stand up, so I think that walking is not too far in the future. He is such a jolly baby - always smiling and laughing. He loves being able to eat baby food twice a day, and I think that he will soon start to glean a little from the table. He is the proud owner of 6 teeth now, but you have to be careful that your hands don't end up near them, or you will know their strength. (Oww!!) Yes, he likes to use those pearly whites.

We would appreciate your prayers for our health. It has been a long time since we have all been well, and the next exam will be postponed if David's cold is not over.

Thanks for keeping up with us, we truly love and appreciate you all.

-Kim

More and More

The pink eye has spread to Isaac, so he is now the one fighting the 3-times daily eye drops. David ran a fever for three days last week, and is now on some pretty strong antibiotics. Yesterday his blood counts were extremely low. We are having to watch him to make sure that he doesn't run any more fevers, or that could get dangerous. Needless to say, we are staying tucked at home.

-Kim

Since I last typed at you, we've had a round of scarlet fever, a round of pink eye, several more cold type illnesses, and then a strange likely virus that caused several days of a high fever. Today is really the first day that there hasn't been any real problem, but I still have several kiddos on antibiotics, and now, I have a sore throat starting.

On the brighter side, though, today has been exceptionally warm, so I have had the windows open to air out all the germs. I have washed just about every single soft item in the house that is small enough to fit into the washer, and I have disinfected all the bathrooms, the kitchen, the dining room table, and sanitized many of the most favorite toys.

Needless to say, I look forward to Spring....when the cold and flu-like bugs have migrated to colder and more distant climates.

David is the latest to be stricken. He ran a fever for several days this week. His blood counts have been up and down and up and down as he has fought off each new bug. He has had several injections of an antibiotic called Rosefin (not sure of the spelling). Apparently this drug is a very systemic antibiotic to ward off anything that might be ailing him. This isn't the first time that he's had to have this drug, but I am hoping that it will be his last. He will continue on an oral antibiotic for the next 7 days, and then.....hopefully....we will be done with all the sickness at our house.

I still don't know when David's next exam will be, but I am assuming that it will be within the next month.

I'll update again soon.....I hope :-)

-Kim

Past Two Weeks

I can't believe that we are two weeks past this last round of chemo already.

David is doing remarkably well. His platelets gave us cause for notice this time, but so far, all we've had to do is watch them. They dipped to their lowest point yet, but hopefully since we are past the 14 day mark, they won't go down any more.

We have all had sore throats and runny noses, but so far we have been able to stay away from doctors, medications, and all that sort of thing.

David is now the proud owner of 4 pearly white teeth. He has enjoyed using them on anything small enough to get into his mouth - including his brother's and sister's fingers.

Tomorrow, we have a genetics appointment. I don't know if we will learn anything immediately. In fact, I really don't even know what to expect.

-Kim

Finished to Begin

Monday, David got his last chemo!!! We went in early that morning for the eye doc. to take some more pictures. Everything seems to be on track, so that was positive news.

The anesthisiologists at the Eye Center had trouble accessing his port. They assumed that it was blocked. The nurse at the Oncology department was able to flush the clot and access it. It acted differently than normal, but it didn't give us concern until David got very fussy and irritated. Sometime around 3pm I noticed that the front of his outfit was wet, and when I went to check what was going on, I realized that something was amiss. It happens that in moving around, the needle came out of his port, but not all the way out, so his IV fluids were running just under his skin. There was a lot of swelling all over his chest, and they had to wait for the swelling to go down before they could reaccess the port to try all over again. They also did a chest x-ray to make sure that it wasn't a problem with the port. All was fine, and we got underway sometime near 6pm. It was a long day, but we got the last treatment!!

One way that we were shown of God's love and care for us was that David's labs were taking an extremely long time to come back to the pharmacy. They will not mix his chemo until they have all the parts of the labs back. If they would have come back earlier, he would have had chemotherapy drugs leaking underneath his skin instead of just saline. This could have been very damaging. So, once again, God has protected us from what could be.

We have an appointment with the genetics people at the end of the month, and then David will have another exam in 6-8 weeks to see how the tumor responds after the chemo is out of his system. We have finished the chemo just to begin this next step of watching.

Thank you for all your prayers and generosity to our family. There is no doubt that we wouldn't have been able to survive this ordeal without the love and support of our Christian family. We love you all more than you will ever know. I'll update you more later

-Kim
David waiting for his exam


With Mommy in the Oncology waiting room


Tearing up paper with Daddy while we wait to go to the Day Hospital (where they give the chemo)


Getting chemo and drinking OJ - actually, just playing with the bottle


Finally - a nap

One Week

David's last treatment of chemo is scheduled for one week from now. Unfortunately, our whole family - including David - has caught the icky bug that has been flying around stinging people everywhere. David and the big kids all have really bad coughs and runny noses, and David also has an ear infection that he is now on antibiotics for. I am nervous that he is going to miss his chemo again.

I have been sick. Rob has only has very mild symptoms. I think that I am getting better as I have been drinking a whole lot of tea, orange juice, water, milk, and any other healthy liquidy thing I can find. This sickness seems to hang on and on and on and on.

So, that is where we are at. I am glad for the warmer temps that we are having today. We are all cabin crazy.

-Kim

New

"Oh, sing to the Lord a new song! Sing to the Lord, all the earth.

Sing to the Lord, bless His name; proclaim the good news of His salvation from day to day.

Declare His glory among the peoples."

Happy New Year!

I hope your holiday season was the best ever. Ours was wonderful. We stayed at home this year since David's counts were to be hitting their lowest around Christmas day. It was sad not being with lots of extended family, but I think this was actually a good thing for the kids. I think they needed a little more quiet, and one-on-one time with Daddy.

Rob was able to have 12 days off from work, and that was a blessing. We were able to get a few small projects done around the house, and we were able to do a lot of family stuff (aka: playing games, watching movies, playing in the yard, reading books). He goes back to work tomorrow. I think that Isaac is going to take this pretty hard since he seems to really need Rob right now.

It is only 14 days until David's last treatment of Chemo....if all goes well. We will be taking him in early (6am) for an exam by the eye doctor and then straight over to the Day Hospital for the chemo. It will be a long day, but I am glad that we get to do it all at once and get it over with. I am still unsure what the future routine will be, but I guess experience will be the best teacher.

The first thing that will happen is a genetics appointment on January 31. They will be trying to determine if David's retinoblastoma was caused by an inherited gene or if it was caused by a spontaneous gene mutation while in utero. This is important for us since each different scenario has different implications for David's future, and also for Hannah and Isaac. We are pretty sure that David's retinoblastoma was caused by a spontaneous gene mutation (which is the better scenario of the two) since we have never heard of this condition on either side of our family. But, we will have to wait and see. I think that this will probably involve genetic testing of Rob's and my blood as well as David's blood.

After that, we know that for several years, David will have to have extensive exams every 3 months.

But right now, we have one of the happiest little guys on the planet. He loves to be with the older kids, and just lights up the room with his smile. The big kids love him too! We have been spending a lot of time this holiday just being thankful for our little family and all that God has so generously blessed us with.

So, we start this year out right - with hearts full of praise to our God.

-Kim

Here are some new pictures for you.